A randomized controlled trial of a novel home-based palliative care program: A report of a trial that could not be completed.

BACKGROUND: In response to a growing need for accessible, efficient, and effective palliative care services, we designed, implemented, and evaluated a novel palliative care at home (PC@H) model for people with serious illness that is centered around a community health worker, a registered nurse, and a social worker, with an advanced practice nurse and a physician for support. Our objectives were to measure the impact of receipt of PC@H on patient symptoms, quality of life, and healthcare utilization and costs. METHODS: We enrolled 136 patients with serious illness in this parallel, randomized controlled trial. Our primary outcome was change in symptom burden at 6 weeks. Secondary outcomes included change in symptom burden at 3 months, change in quality of life at 6 weeks and 3 months, estimated using a group t-test. In an exploratory aim, we examined the impact of PC@H on healthcare utilization and cost using a generalized linear model. RESULTS: PC@H resulted in a greater improvement in patient symptoms at 6 weeks (1.30 score improvement, n = 37) and 3 months (3.14 score improvement, n = 21) compared with controls. There were no differences in healthcare utilization and costs between the two groups. Unfortunately, due to the COVID-19 pandemic and a loss of funding, the trial was not able to be completed as originally intended. CONCLUSIONS: A palliative care at home model that leverages community health workers, registered nurses, and social workers as the primary deliverers of care may result in improved patient symptoms and quality of life compared with standard care. We did not demonstrate significant differences in healthcare utilization and cost associated with receipt of PC@H, likely due to inability to reach the intended sample size and insufficient statistical power, due to elements beyond the investigators' control such as the COVID-19 public health emergency and changes in grant funding.

County-Level Social Vulnerability, Metropolitan Status, and Availability of Home Health Services.

This cross-sectional study assesses county-level differences in home-based medical care and home health care by social vulnerability and metropolitan status.

The heterogeneity of the homebound: A latent class analysis of a national sample of homebound older adults.

BACKGROUND: Homebound status is a final common pathway for people with a variety of diseases and conditions. There are 7 million homebound older adults in the United States. Despite concerns regarding their high healthcare costs and utilization and limited access to care, the unique subsets within the homebound population are understudied. Better understanding of distinct homebound groups may enable more targeted and tailored approaches to care delivery. Therefore, in a nationally representative sample of homebound older adults we used latent class analysis (LCA) to examine distinct homebound subgroups based on clinical and sociodemographic characteristics. MATERIALS AND METHODS: Using data from the National Health and Aging Trends Study (NHATS) 2011-2019, we identified 901 newly homebound persons (defined as never/rarely leaving home or leaving home only with assistance and/or difficulty). Sociodemographic, caregiving context, health and function, and geographic covariates were derived from NHATS via self-report. LCA was used to identify the existence of distinct subgroups within the homebound population. Indices of model fit were compared for models testing 1-5 latent classes. Association between latent class membership and 1 year mortality was examined using a logistic regression. RESULTS: We identified four classes of homebound individuals differentiated by their health, function, sociodemographic characteristics, and caregiving context: (i) Resource constrained (n = 264); (ii) Multimorbid/high symptom burden (n = 216); (iii) Dementia/functionally impaired (n = 307); (iv) Older/assisted living (n = 114). One year mortality was highest among the older/assisted living subgroup (32.4%) and lowest among the resource constrained (8.2%). CONCLUSIONS: This study identifies subgroups of homebound older adults characterized by distinct sociodemographic and clinical characteristics. These findings will support policymakers, payers, and providers in targeting and tailoring care to the needs of this growing population.

Symptom Management Experience of End-of-Life Family Caregivers: A Population-Based Study.

CONTEXT: In the United States, 30% of all deaths occur at home. Effective symptom management is integral to quality end-of-life (EOL) care. Family caregivers play a major role in EOL symptom management. Recent federal policies emphasize the need to improve training and support for family caregivers. OBJECTIVES: In a nationally representative sample: 1) Characterize the population of caregivers assisting with and reporting difficulty in symptom management at the end of life; and 2) Assess caregiver and care recipient characteristics associated with caregiver report of difficulty. METHODS: Cross-sectional analysis of data from the National Health and Aging Trends Study and National Study of Caregiving. Multivariable logistic regression to assess association between care recipient and caregiver characteristics and caregiver report of difficulty. RESULTS: Caregivers (n = 214) were mean age 57.1 years, 74% female, and 86% white non-Hispanic. Over 2 million family caregivers provided assistance with symptom management in the last month of life in 2017; 78% reported difficulty. Non-Hispanic Black caregivers (aOR 0.24, 95% CI 0.08-0.75), Hispanic caregivers (0.13, 0.03-0.56), and caregivers with lower than high school education (0.26, 0.11-0.63) were less likely to report difficulty. Caregivers of care recipients who received paid care (3.37, 1.30-8.69) were more likely to report difficulty. Receipt of training and support services (1.80, 0.83-3.93) and hospice (1.83, 0.82-4.07) were not associated with caregiver report of difficulty. CONCLUSION: These findings underscore the need to improve training and support for family caregivers in EOL symptom management.

Non-Concordance between Patient and Clinician Estimates of Prognosis in Advanced Heart Failure.

IMPORTANCE: Despite efforts to enhance serious illness communication, patients with advanced heart failure (HF) lack prognostic understanding. OBJECTIVES: To determine rate of concordance between HF patients' estimation of their prognosis and their physician's estimate of the patient's prognosis, and to compare patient characteristics associated with concordance. DESIGN: Cross-sectional analysis of a cluster randomized controlled trial with 24-month follow-up and analysis completed on 09/01/2020. Patients were enrolled in inpatient and outpatient settings between September 2011 to February 2016 and data collection continued until the last quarter of 2017. SETTING: Six teaching hospitals in the U.S. PARTICIPANTS: Patients with advanced HF and implantable cardioverter defibrillators (ICDs) at high risk of death. Of 537 patients in the parent study, 407 had complete data for this analysis. INTERVENTION: A multi-component communication intervention on conversations between HF clinicians and their patients regarding ICD deactivation and advance care planning. MAIN OUTCOME(S) AND MEASURE(S): Patient self-report of prognosis and physician response to the "surprise question" of 12-month prognosis. Patient-physician prognostic concordance (PPPC) measured in percentage agreement and kappa. Bivariate analyses of characteristics of patients with and without PPPC. RESULTS: Among 407 patients (mean age 62.1 years, 29.5% female, 42.4% non-white), 300 (73.7%) dyads had non-PPPC; of which 252 (84.0%) reported a prognosis >1 year when their physician estimated <1 year. Only 107 (26.3%) had PPPC with prognosis of ≤ 1 year (n=20 patients) or > 1 year (n=87 patients); (Κ = -0.20, p = 1.0). Of those with physician estimated prognosis of < 1 year, non-PPPC was more likely among patients with lower symptom burden- number and severity (both p ≤.001), without completed advance directive (p=.001). Among those with physician prognosis estimate > 1 year, no patient characteristic was associated with PPPC or non-PPPC. CONCLUSIONS AND RELEVANCE: Non-PPPC between HF patients and their physicians is high. HF patients are more optimistic than clinicians in estimating life expectancy. These data demonstrate there are opportunities to improve the quality of prognosis disclosure between patients with advanced HF and their physicians. Interventions to improve PPPC might include serious illness communication training.

Prognostic Awareness and Goals of Care Discussions Among Patients With Advanced Heart Failure.

BACKGROUND: Prognostic awareness (PA)-the understanding of limited life expectancy-is critical for effective goals of care discussions (GOCD) in which patients discuss their goals and values in the context of their illness. Yet little is known about PA and GOCD in patients with advanced heart failure (HF). This study aims to determine the prevalence of PA among patients with advanced HF and patient characteristics associated with PA and GOCD. METHODS: We assessed the prevalence of self-reported PA and GOCD using data from a multisite communication intervention trial among patients with advanced HF with an implantable cardiac defibrillator at high risk of death. RESULTS: Of 377 patients (mean age 62 years, 30% female, 42% nonwhite), 78% had PA. Increasing age was a negative predictor of PA (odds ratio, 0.95 [95% CI, 0.92-0.97]; P<0.01). No other patient characteristics were associated with PA. Of those with PA, 26% had a GOCD. Higher comorbidities and prior advance directives were associated with GOCD but were of only borderline statistical significance in a fully adjusted model. Symptom severity (odds ratio, 1.77 [95% CI, 1.19-2.64]; P=0.005) remained a robust and statistically significant positive predictor of having a GOCD in the fully adjusted model. CONCLUSIONS: In a sample of patients with advanced HF, the frequency of PA was high, but fewer patients with PA discussed their end-of-life care preferences with their physician. Improved efforts are needed to ensure all patients with advanced HF have an opportunity to have GOCD with their doctors. Clinicians may need to target older patients with HF and continue to focus on those with signs of worsening illness (higher symptoms). Registration: URL: https://www.clinicaltrials.gov; Unique identifier: NCT01459744.

Evaluation of a Novel Educational Intervention to Improve Conversations About Implantable Cardioverter-Defibrillators Management in Patients with Advanced Heart Failure.

Background: Implantable cardioverter-defibrillators (ICDs) reduce the incidence of sudden cardiac death for high-risk patients with heart failure (HF), but shocks from these devices can also cause pain and anxiety at the end of life. Although professional society recommendations encourage proactive discussions about ICD deactivation, clinicians lack training in conducting these conversations, and they occur infrequently. Methods: As part of a six-center randomized controlled trial, we evaluated the educational component of a multicomponent intervention shown to increase conversations about ICD deactivation by clinicians who care for a subset of patients with advanced HF. This consisted of a 90-minute training workshop designed to improve the quality and frequency of conversations about ICD management. To characterize its utility as an isolated intervention, we compared HF clinicians' pre- and postworkshop scores (on a 5-point Likert scale) assessing self-reported confidence and skills in specific practices of advance care planning, ICD deactivation discussions, and empathic communication. Results: Forty intervention-group HF clinicians completed both pre- and postworkshop surveys. Preworkshop scores showed high baseline levels of confidence (4.36, standard deviation [SD] = 0.70) and skill (4.08, SD = 0.72), whereas comparisons of pre- and postworkshop scores showed nonsignificant decreases in confidence (-1.16, p = 0.252) and skill (-0.20, p = 0.843) after the training session. Conclusions: Our findings showed no significant changes in self-assessment ratings immediately after the educational intervention. However, our data did demonstrate that HF clinicians had high baseline self-perceptions of their skills in advance care planning conversations and appear to be well-primed for further professional development to improve communication in the setting of advanced HF.

Improving Communication in Heart Failure Patient Care.

BACKGROUND: Although implantable cardioverter-defibrillators (ICDs) reduce sudden death, these patients die of heart failure (HF) or other diseases. To prevent shocks at the end of life, clinicians should discuss deactivating the defibrillation function. OBJECTIVES: The purpose of this study was to determine if a clinician-centered teaching intervention and automatic reminders increased ICD deactivation discussions and increased device deactivation. METHODS: In this 6-center, single-blinded, cluster-randomized, controlled trial, primary outcomes were proportion of patients: 1) having ICD deactivation discussions; and 2) having the shocking function deactivated. Secondary outcomes included goals of care conversations and advance directive completion. RESULTS: A total of 525 subjects were included with advanced HF who had an ICD: 301 intervention and 224 control. At baseline, 52% (n = 272) were not candidates for advanced therapies (i.e., cardiac transplant or mechanical circulatory support). There were no differences in discussions (41 [14%] vs. 26 [12%]) or deactivation (33 [11%] vs. 26 [12%]). In pre-specified subgroup analyses of patients who were not candidates for advanced therapies, the intervention increased deactivation discussions (32 [25%] vs. 16 [11%]; odds ratio: 2.90; p = 0.003). Overall, 99 patients died; there were no differences in conversations or deactivations among decedents. SECONDARY OUTCOMES: Among all participants, there was an increase in goals of care conversations (47% intervention vs. 38% control; odds ratio: 1.53; p = 0.04). There were no differences in completion of advance directives. CONCLUSIONS: The intervention increased conversations about ICD deactivation and goals of care. HF clinicians were able to apply new communication techniques based on patients' severity of illness. (An Intervention to Improve Implantable Cardioverter-Defibrillator Deactivation Conversations [WISDOM]; NCT01459744).

Update in Hospice and Palliative Care.

OBJECTIVE: The objective of this update, presented at the 2018 Annual Assembly of the American Association of Hospice and Palliative Medicine (AAHPM) and the Hospice and Palliative Nurses Association (HPNA), is to identify, summarize, and critique a sampling of recent research that has the potential for marked impact on hospice and palliative clinical practice. METHODS: In a departure from previous years, we surveyed AAHPM and HPNA members to determine focused topic areas, from which we selected candidate articles. The two topic areas selected by the membership were "Moving into the great beyond: bringing palliative care into the subspecialties" and "Improving the conversation for patients with serious illness." Seven reports of original research published between January 1, 2012 and November 3, 2017 were identified through a systematic search of relevant databases, hand searching of leading journals, and discussion with experts in the field. Candidate articles were scored and ranked independently by four reviewers based on methodological quality, appeal to a breadth of palliative care clinicians across settings, and potential for impact. RESULTS: We summarize the seven articles with the highest ratings.

Identifying Older Adults With Serious Illness: Transitioning From ICD-9 to ICD-10.

CONTEXT: Identifying the seriously ill population is integral to improving the value of health care. Efforts to identify this population using existing data are anchored to a list of severe medical conditions (SMCs) using diagnostic codes. Published approaches have used International Classification of Diseases, Ninth Revision (ICD-9) codes, which has since been replaced by ICD-10. OBJECTIVES: We translated SMCs from ICD-9 to ICD-10 using a refined code list. We aimed to test the hypothesis that people identified by ICD-9 or ICD-10 codes would have similar Medicare costs, health care utilization, and mortality. METHODS: Using data from the National Health and Aging Trends Study linked to Medicare claims, we compared samples from periods using ICD-9 (2014) and ICD-10 (2016). We included participants with six-month fee-for-service Medicare data before their interview date who had an SMC identified within that period. We compared the groups' demographic, functional, and medical characteristics and followed up them for six months to compare outcomes. RESULTS: Among subjects in the 2016 (ICD-10) sample, 19.9% were hospitalized, 24.6% used the emergency department, 7.2% died, and average Medicare spending totaled $9902.04 over six months of follow-up. We observed no significant differences between the 2014 and 2016 samples (P > 0.05); both samples represent 18% of Medicare fee-for-service beneficiaries. CONCLUSION: Identifying the seriously ill population using currently available data requires using ICD-10 to define SMCs. Routine measurement of function, quality of life, and caregiver strain will further enhance the identification process and efficiently target palliative care services and appropriate quality measures.

Phase of Illness in palliative care: Cross-sectional analysis of clinical data from community, hospital and hospice patients.

BACKGROUND: Phase of Illness describes stages of advanced illness according to care needs of the individual, family and suitability of care plan. There is limited evidence on its association with other measures of symptoms, and health-related needs, in palliative care. AIMS: The aims of the study are as follows. (1) Describe function, pain, other physical problems, psycho-spiritual problems and family and carer support needs by Phase of Illness. (2) Consider strength of associations between these measures and Phase of Illness. DESIGN AND SETTING: Secondary analysis of patient-level data; a total of 1317 patients in three settings. Function measured using Australia-modified Karnofsky Performance Scale. Pain, other physical problems, psycho-spiritual problems and family and carer support needs measured using items on Palliative Care Problem Severity Scale. RESULTS: Australia-modified Karnofsky Performance Scale and Palliative Care Problem Severity Scale items varied significantly by Phase of Illness. Mean function was highest in stable phase (65.9, 95% confidence interval = 63.4-68.3) and lowest in dying phase (16.6, 95% confidence interval = 15.3-17.8). Mean pain was highest in unstable phase (1.43, 95% confidence interval = 1.36-1.51). Multinomial regression: psycho-spiritual problems were not associated with Phase of Illness ( χ2 = 2.940, df = 3, p = 0.401). Family and carer support needs were greater in deteriorating phase than unstable phase (odds ratio (deteriorating vs unstable) = 1.23, 95% confidence interval = 1.01-1.49). Forty-nine percent of the variance in Phase of Illness is explained by Australia-modified Karnofsky Performance Scale and Palliative Care Problem Severity Scale. CONCLUSION: Phase of Illness has value as a clinical measure of overall palliative need, capturing additional information beyond Australia-modified Karnofsky Performance Scale and Palliative Care Problem Severity Scale. Lack of significant association between psycho-spiritual problems and Phase of Illness warrants further investigation.

A complicated case of metastatic thymoma.

This report describes the case of a 49-year-old man who presented to the hospice with severe neuropathic pain, cramps, muscle twitching, generalised sweating, insomnia and anxiety in the context of metastatic thymoma. The symptoms were exquisitely corticosteroid sensitive raising the possibility of an immunogenic aetiology. Morvan's syndrome, a paraneoplastic, immune-mediated syndrome characterised by peripheral nerve hyperexcitability, dysautonomia and central nervous system dysfunction was thus considered. Nerve conduction studies and electromyography were negative as were initial serological assays. Subsequent assays for antibodies to leucine-rich, glioma inactivated one protein and contactin-associated protein-2, recently discovered to be associated with Morvan's syndrome, confirmed the diagnosis. By the time the diagnosis of Morvan's syndrome was reached the patient was too unwell to receive disease-modifying treatments. An awareness of Morvan's syndrome in Palliative and Supportive care is essential to improve the outcome of patients with this devastating syndrome.

Diffuse large B cell lymphoma complicating total knee arthroplasty: case report and literature review of the association of diffuse large B cell lymphoma with joint replacement.

Primary lymphoma of bone is extremely rare. There are increasing reports of lymphoma arising in bone adjacent to metallic prostheses. Herein, we describe the case of a 76-year-old man who developed diffuse large B cell lymphoma in the tibia 3 years after total knee arthroplasty for osteoarthritis. A review of the literature has identified 11 other cases of lymphoma arising in the context of orthopaedic metallic implants. To our knowledge this is the first reported case of a primary lymphoma arising in bone adjacent to a knee prosthesis. Possible pathogenetic mechanisms may include chronic antigenic stimulation of lymphocytes, proliferation of EBV-infected B lymphocytes, and direct mutagenic effects of metallic ions. Further research is required to investigate this intriguing link between metallic orthopaedic prostheses and localized lymphoma.